FND awareness day

The 25th of March marked Functional Neurological Disorder (FND) Awareness Day!

Despite its impact on many, lots of people have never even heard of FND, including me… until I was diagnosed!

FND is considered an umbrella term, which encompasses a diverse range of neurological symptoms and conditions that lack identifiable structural or neurological abnormalities.

The start of my FND journey

It was a Friday night in February 2023, when I was sitting in the car with my partner, singing along to the radio, on our way home from the shops for an obligatory bottle of wine and a takeaway. I was more than ready to burst through the door, dive into my PJs and stuff my face, after a stressful week of juggling work and a nursing course at Uni.

Then it happened… my first dissociative seizure.

I don’t remember much about the rest of that night, except for the pain in my head and the worried look on my partner’s face. I optimistically hoped it was a one-off weird experience.

Little did I know that this night was the start of a very long and scary nightmare. There followed numerous appointments with various health professionals, tests, and trips to A&E.

What was even more scary than the seizures themselves was how completely alone I felt when I left the neurologist’s office – who indicated it was likely that I have FND – with no more information than a link to a website.

My symptoms include seizures, which then lead to difficulty with cognitive function, speech and movement, headaches, and pain all over my body that I sometimes can’t even locate.

Before I have a seizure, it feels like I am about to have a panic attack, with high heart rate, chest pains, etc. It’s almost like a warning sign. I find that the feeling of having a panic attack is reduced by the seizure so I often find it relieving.

I will often also lose awareness/ability to interact with my surroundings, stare blankly, have my limbs tense up, and start to shake.

When I have a seizure the best way to make sure I’m okay is to:

  • Make sure I am safe and move away objects that may harm me
  • Guide me somewhere quiet and sit with me
  • DO NOT attempt to restrict movement
  • Talk to me calmly
  • Guide me to a seat or the floor
  • Call an ambulance if needed

There are posters around the Celebrate Difference office so the team can help me out if needed, and also know how to take care of me after a seizure.

I feel like I have had more support since starting here at Celebrate Difference, as I have been able to think about it and put things in place for myself.

The majority of people with FND have reported feeling disrespected or dismissed when visiting a medical professional. This makes being aware of FND and telling our stories more and more important.

Useful links for info on FND:

HOME FND Hope – FND Hope International

What is Functional Neurological Disorder – FND Action

What is functional neurological disorder? Explaining the most common condition you have never heard of (thebraincharity.org.uk)

Talking about FND and supporting each other is what matters most to me. Just know you’re not alone, and follow me on Linkedin where I share my story.